Monthly Archives: June 2014

Storm

Today was the memorial service for a friend of mine who passed away suddenly last week.  We’d been in the same treatment program, and he was my upstairs neighbor for two years.  He would’ve liked the memorial service, I think–people who’d known and cared about him, sharing memories of him.

I didn’t speak at the service, but the memory that kept coming to me was a summer evening maybe three years ago.  A storm was blowing in, with these beautiful, dramatic, roiling clouds.  I was lying on the grass in the backyard, watching the sky.  He came out too.  Most people would’ve looked at me funny and asked what on earth I was doing out there when there was a big storm about to hit, but he understood without saying anything.  He lay down in the grass too.  First it was just these big, dark clouds, constantly shifting and changing.  Then the lightning started, far off.  We couldn’t see distinct lightning bolts, just bright flashes in the clouds, bright as day for a moment.  Then the rain started, sudden and heavy, but neither of us got up and went inside.  We let it soak us so we could watch the storm, feel the energy all around us.

We finally did go in, once the lightning started getting close.  But what I remember was lying there in the grass together, watching the storm, not having to explain to him why I was lying on the ground in a storm.

I don’t know why that’s the memory that sticks with me.  I don’t think there has to be a reason, really.  Just connection and energy.

I miss him.

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Last night, I dreamed about the time in my late teens/early twenties when I was homeless, crashing on friends’ couches and living in my car when I ran out of friends.

In my dream, I’d finally managed to get my own apartment.  It had been hard to get, although I can’t remember exactly how.  It was small, but it was safe and bright and mine.  I felt like I was going to be okay, finally.

And then one day I came home, and everything I owned was tossed in a pile outside the door.  I didn’t own that much, but a lot of it had already been stolen–I don’t know how long it had all been sitting there for anyone to take.  I tried to get into my apartment, but my key didn’t work.  The landlord had changed the locks.  I’d been kicked out.  I’d done everything right, paid all my rent on time and never broken any rules, but I’d been kicked out anyway.

I gathered as much of my stuff as I could hold and ran out to my car, but it was gone too.  There was nowhere of my own left.  I tried calling people I knew to come and help me, but no one was picking up the phone.  I was all alone.

*

I don’t know why I’ve been having these sad, hopeless dreams the last few weeks.  I don’t feel that way when I’m awake, and I’m not dreading going to sleep.  So where are these dreams coming from?

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June 15, 2014 · 8:04 pm

Convention, Part 2

I’m home from the convention.  Completely exhausted, but it was totally worth it.

Both of the candidates I’ve been working for did well.  Both finished in second place, which was what we expected in both races.  (Both of them are facing candidates with more money and political capital than they have.  One has a super-PAC, which is a rant for another day.)  I was pretty pleased with myself because I accurately predicted the rankings in 3 of the 4 races.  (The fourth one, the treasurer’s race, I honestly just didn’t care much about.)

Physically, it was a tough day.  I only got about 3 hours of sleep–probably not even that, since a lot of it was this twilight state where I knew I wasn’t quite asleep.  After the first hour, if I tried to stay on my feet for more than a minute or two, my legs would start shaking so bad I’d have to sit down.  It’s the same feeling as you get during an intense workout when your muscles get so fatigued they twitch and shake, but there was no intense workout happening–just trying to stand up.  I did manage to stand up for the pledge of allegiance, but I had to sit down for the national anthem.

If you recall, my job was supposed to be to follow the party teller around my senate district all day to record who was here for roll call and then who they voted for once voting started in the afternoon.  Obviously that wasn’t going to happen.  Luckily, our senate district lead whip was able to do that, and then I’d tally everything, text the soft numbers to the campaign staff, and enter the data in on my phone.  It worked out.

I was pretty frustrated, though, by the convention’s disability-unfriendliness.  Unfriendly isn’t quite the right term since that implies an intentional effort to make things harder.  I think it was more just that they didn’t have a great idea of what true accessibility is.  For instance, they had closed-captioning of everything on two big screens, which is great…but then people would stand in front of them.  We had a Deaf woman in our delegation, so our whips were constantly having to ask people to move so she could see the captioning.  There were a lot of times when people were asked to stand–presentation of the colors, the invocation prayer, the pledge of allegiance, the national anthem, and retiring the colors…took about 15 minutes in all.  And in my senate district, when we voted, the party teller wanted each town to move to a different corner of our assigned seating area.  The rows of seats were extremely narrow, littered with lit and bags and water bottles, and impossible to navigate safely with the cane.  So I sat down in the aisle closest to where the party teller put my town, and then somebody from the convention center staff told me I couldn’t do that because it was a fire hazard.  There was one man in our senate district who needed a wheelchair, but since it was stadium seating that his wheelchair would never fit into, he just had to sit there in the aisle, not really with the rest of the delegates.  At several points during the convention when no one was speaking, they turned on music and flashing strobe lights–um, guys, with 6000 people there, I can pretty much bet there are people with epilepsy, and that crap could trigger seizures.

I don’t think any of this was malicious at all, but it was still disappointing, especially since they made a big point of saying that the convention and the convention center were 100% accessible.  I think people who haven’t had firsthand experience of disability think that as long as you’ve got wheelchair ramps, it’s totally accessible.  But accessibility is much more than that.  I don’t know who plans these conventions, but I’m gonna guess they have few if any people with disabilities involved.  I’d like to see them do a lot better.

Funny side note: one of the sponsors of the convention was a pharmaceutical company called AbbVie.  (I assume they were sponsors or something similar because they had AbbVie pens in the swag bags all the delegates got.)  They’re best known for Humira, which I take for ulcerative colitis.  It was an odd coincidence.

Okay.  Now I’m gonna sleep for a week.  My whole body hurts, and my colon is being a jerk.  And after about 6 hours of sleep out of the last 60, I’m barely coherent.

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Convention, Day 1

So apparently when I said I wouldn’t be around this weekend, I lied.  We left the party early, so I’m hanging out with my laptop in our hotel room.

The convention has been really awesome so far.  We hung out at the campaign’s vendor table for a while before things officially got rolling this afternoon, and I got a chance to talk to people from other campaigns in races I hadn’t decided on.  I’m still not totally sold on a lieutenant governor candidate (I’ve narrowed it down to two choices), and I’m really up in the air about which treasurer candidate I’ll vote for.  I got to talk briefly to one of the LG candidates I’m considering, and I liked him.  Our senate district is seated right by the entrance, so everyone has to walk past us to get in, so we get air time with the candidates much more than most of the other senate districts.  We got good seats because our Representative, Jim McGovern, is one of the major powers in the state party.

I did use my cane, and nobody was a jerk about it.  The questions I got about it were all from people who already knew me and had seen me without the cane, so they were asking out of concern.  Well, there was one woman I hadn’t met before today who asked, but she was asking because she has MS, so it didn’t feel intrusive.  People have actually been really kind–making sure I have a seat, asking if I need any help, stuff like that.  I’m glad people have been so accepting and kind because it was a rough day physically.  If I had to spend more than a minute or two on my feet, my legs started shaking really badly.

I’m a little worried about mobility issues tomorrow.  As a teller whip, I basically have to follow the party teller from my district around for several hours, so that I can see who checks in with the party in the morning and record their votes when we vote in the afternoon.  It’s going to be difficult if standing is as hard tomorrow as it was today.  The mobility issues are pretty new to me, so I haven’t learned the tips and tricks for workarounds and such.  But I’m sure I’ll figure out something.  And if I really need to sit down for a few minutes, I can have one of my whips stay with the teller until I can stand up again.  We can adapt.

Actually, the most frustrating thing for me with the cane is that I don’t have enough hands.  Ive got to be leaning on the cane, but I’m also supposed to be writing in my teller book, and most of the time I also have to have my phone in hand to record data and send soft numbers to the campaign staff.  We humans really need to get around to evolving more arms.  Octopi would be a good model.  I don’t want my arms to be slimy and covered in suckers, but eight arms sounds really good about now, you know?

Here, for your viewing pleasure, is a picture of me from the convention.

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This is before they handed out our T-shirts.  I didn’t know staff and whips were getting T-shirts today, so I wore a little black dress, which the T-shirt doesn’t go well with.  But I just shrugged and pulled the T-shirt on over the dress and cardigan.  It probably looked really goofy, but who cares?  Tomorrow we get different T-shirts, and I’ll be wearing mine with dress pants and a blazer.  I can pretend it’s a new fashion statement or something.  Whatevs.

I’d appreciate good thoughts/prayers/energy for me for tomorrow.  I just need to be able to stay on my feet.

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Won’t Be Around

This is just to say that I probably won’t be around until Sunday or Monday.  We’re going to the convention center in a few hours to check in, do a dry run, and hear Elizabeth Warren speak.  We’re not supposed to take pictures, but I might try to get some anyway because I’m totally in love with her.  And my senate district is seated near the front, since we have an important Congressman.  (Seriously, that’s how they decide where the different senate districts sit.  The other three senate districts in our region are way in the back.)

Then there are parties tonight, where I’ll be schmoozing and persuading delegates until at least midnight, probably later.  There are a few people in particular who I’m really going to try to get to vote for our candidate.

Then tomorrow I’ll be crazy busy all day, from 6:30 AM until god knows when.  I’ll have to follow the party teller around and keep track of nearly 200 delegates and a bunch of whips.  Seriously, I have to know everyone who’s there and who they’re all voting for, and I have to relay that information to the campaign staff once an hour.  Gonna be interesting.  I’m just praying I’ll be able to stay on my feet and not collapse.  I have my cane, so that’ll help some.  I’m still just so self-conscious about using it, you know?  Because I look young and healthy, because people think it entitles them to ask what’s wrong with me, because I feel like it makes me weak to have to use it.  But I will use it and deal with the feelings about it.

Ooh, fun but irrelevant detail: when I go down to Alabama for my sister’s wedding, the three of us are going to get sisters tattoos.  It’s gonna be awesome!  We haven’t picked one out for sure yet, but all the options are cute.

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GI Appointment

Saw my gastroenterologist today.  I thought the appointment was supposed to be with one of the NP’s in the practice, but he apparently took over.  He was PISSED when he found out about the crap his office staff had tried to pull with the appointments.  He told me if they try that again, I should tell them I have ulcerative colitis and need to be followed closely, and if they still give me problems, leave a message for him and he’ll personally schedule me in.

He said he’s just going to keep me on the Entocort, since it’s not causing me any problems to be on it but it causes tons of problems when I try to go off it.  It’s such a relief that he’s not going to keep trying to get me off it–I’ve dealt with a lot of doctors who just didn’t care about the side effects of med changes; they’d just tell me to keep doing whatever they said no matter how bad it got.

He was also very concerned about the fatigue and weakness, and he agreed that the 6-MP was the likeliest culprit.  He also is concerned that it may be causing liver issues, so I have to go get a bunch of labs drawn on Monday after the convention.  In the meantime, he’s having me go down from 100 mg to 75 mg.  He only wants to do one med change at a time, but if decreasing the 6-MP causes more problems, then we’ll either increase the Humira to every week or switch me to Remicade.

It’s just so nice to have a doctor who’s so responsive and doesn’t blow me off because I’m crazy.  He’s literally the best doctor I’ve ever had.  I wish he could be my primary care doc too.  Or maybe somebody should just clone him so he could be everyone’s doctor in every specialty.

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Picture Post!

Today I went and bought the dress and shoes for my sister’s wedding.  Sister doesn’t care what dress the bridesmaids choose as long as they’re the same color, and the store actually had a dress I really liked in the right size and color!  I had just assumed they’d have to order it, but I was able to bring it home today.

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I won’t be wearing it with the athletic socks, though, I swear.  I got a pair of pretty flats (with just a little wedge; I can’t wear heels because my joints are so loose I’ll sprain an ankle) with a peep toe, but they have to dye those to match my dress.

One of my friends suggested I could pin some white squares at the top after the wedding for a TARDIS cosplay.  I approve!

Then I came home, and my bike was on the front porch.  I had to wait until my landlady and her partner got home because I needed to borrow some tools.  (Do not try to loosen a bolt with pliers because they will slip and pinch the hell out of your finger.)  Turns out her partner spent 5 years working at a bike shop, so he knew exactly how to put it all together.

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They’re not great shots because the hallway is too narrow for me to get far enough away, but isn’t it cute?  I feel like I need to buy a 50’s wardrobe to go with it!  I did get a helmet, light, and lock for it.  I was missing one nut (and no, I don’t mean myself), but my landlady’s partner said the bike shop in town will probably just give me one because they have tons of them lying around.  But I cant really ride it much until I get that or my wheel might pop off.  I imagine that wouldn’t work very well.

We’re leaving tomorrow evening for the convention.  I’ll try to post an update about my GI appointment, but there may not be any posts until Sunday or Monday.  But don’t worry; it just means I’m having fun at the convention.

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Busy!

I haven’t posted in a while, I think.  I haven’t had much to say–pretty much all my time and attention is going toward the convention, and that stuff would probably be either incomprehensible or boring to most of you.  Suffice it to say I’ve been busy.  At least 3-4 hours of calls a day, plus training some of our whips.  Somehow I’ve also become tech support for our region, which is kind of a joke.  I’m decent with computers, but not great.  Tonight I solved a guy’s problem with the mobile app for Android…but that’s not very impressive because all I did was google it.

I had a nice birthday.  I went out canvassing for a couple hours, and then I came home and watched The X-Files and ate mango-passion fruit sorbet.  I got a package of gluten-free/vegan peanut butter chocolate chip cookies from one of my friends from the trauma unit, and another friend sent me a package with really cute shoes, a top, a bag, and some yummy tea.  There was some kind of shipping issue with my bike, so I haven’t gotten it yet, but I think it’s on the way.  With my luck, it’ll come when I’m at the convention.  But I think my roommates will be here, so it’s all good.

I’m anxiously waiting for my GI appointment on Thursday.  I’m not even sure who I’m seeing from that practice–my pushy nurse friend was the one who ultimately got me an appointment that was before August.  And it’s a good thing, too.  The pain’s been pretty bad.  It comes in waves, so at least it’s not constant…but when it hits, I’m doubled over and incapacitated.  I’m only seeing blood occasionally now, but I’m still pooping bright orange pretty frequently and leaking a lot of the time.

I think I’m going to push for them to switch me to Remicade.  Whoever it is probably won’t want to do it without talking to the doctor I usually see, but I’m hopeful.  I’m taking my pushy RN friend, so she may be useful in that regard.  I’m also going to ask for pain meds to get me through the convention and until we can get me on some meds that work better.  I rarely ask for pain meds; in fact, I don’t think anyone at this practice has ever written me a script for narcotics.  I’d been using a two-week supply they gave me from my ER visit back around Thanksgiving; that’s how infrequently I take them because they make me dumb.  But I can’t be curled up in pain for the convention.

I’m also going to talk to whoever it is about the possibility of reducing the 6-MP.  I really think it’s responsible for the horrible fatigue, and I know it’s what’s causing the nausea.  Reducing it does worry me because it’s the only thing that’s gotten me anywhere close to remission, but now it’s making it almost impossible to function.  I’m hoping that switching to Remicade (or potentially vedolizumab, if it’s available this soon) will get this shit under control enough that I can reduce the 6-MP.  Not flaring doesn’t do me any good if I can’t get out of bed to enjoy it.

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After an awesome last two day, I came down hard today.  I guess I should’ve expected it.

I woke up from a nightmare.  I had a brother, or he might’ve been a half-brother or step-brother.  He was 8.  I loved him, but something was wrong with him.  Everyone thought he was this perfect angel, but he kept doing things to hurt me.  He would steal things from me, things he knew I needed.

Then he framed me for something really bad–murder, I think.  Something bad enough that everyone was chasing me.  (Most of my nightmares feature chases as a major element.  Sometimes it’s just a straight-up foot pursuit, but a lot of the time it’s complicated, with hiding and disguises and so forth.)  I was in a big city, and I knew I couldn’t stop or they’d catch me.  I was so tired, though.  I’d been running for days, and I just wanted to sleep.  I went to this magic building–I’d taken my brother there before all this.  It had this stairway that just kept going and going, twisting up and up and up even though from the outside the building was only about three stories tall.  But if you could somehow magically get to the top, there was a zen garden, and if I could get in the pond there, I’d be safe.  But somehow, in all the running, I’d lost my cane.  (In real life, I’ve been pretty dependent on it lately.)  I tried to drag myself up by holding onto the banister rail, but I knew I was too slow.  The longer you spent in the stairwell, the higher it got, so I needed to be fast, but I just couldn’t.

I was crying, sobbing, as I dragged myself back down all the stairs.  Down was much easier than up, but down still hurt too.  I tried to hide in a church, mostly dissociated, but they kept trying to lay hands on me to heal me.  That just made me panic and shake and dissociate, which they thought meant they were driving the demons out of me.  Really I was just alone and terrified, and they wouldn’t stop touching me, their hands all over me.

I got out of the church, but I could barely even walk anymore.  I needed to rest, so I thought if I could get a sleeping bag, I could go in the park like the homeless people and sleep, and nobody would think it was me because they’d expect me to be running.  So I went to my landlady’s house (where I live in real life) because I knew she had sleeping bags in the basement.  I managed to get down to the basement, but then they found me there.  There was no way to get away–there’s only one way out, and they were standing there on the wooden steps, standing in front of the door.  I was trapped in this dark concrete room, and I was so cold and everything hurt.  Still, I tried to keep them from getting me.  I limped in circles around the room, leaning against the wall because I couldn’t even hold myself up anymore.  But it was hopeless.  Finally I just curled up in a corner and dissociated.  I knew, distantly, that they were hurting my body, but I wasn’t there and there was nothing I could do to stop it.

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June 6, 2014 · 6:15 pm

On the Road

Today was another day on the road with RFD and FO.  Today we had a morning meeting with the senate district whip for my district, and then we drove out to Boston to Headquarters.  I entered a big stack of canvass data, cut about 40 turfs (that’s laying out what areas people are going to canvass door-to-door, and it’s involved and fiddly), and made a little over 100 calls in two hours.

There were a few snafus.  First, when I was cutting turfs, the program decided that my turf was in the middle of the ocean off the coast of China.  I tried logging out and back in and using three different browsers, but it kept putting my turf in the ocean.  Finally I just gave up.  And then, right in the middle of call time, my cell phone died.  It was working fine, fully charged, and I got up to go to the bathroom.  When I came back, it was dead as a doornail.  Won’t even turn on.  But I made the rest of my calls on what might be the only land line at HQ.  And even with all that, I managed to make as many calls as FO did, and he was using two phones.  Also, several of the campaign staff told me I have a perfect phone voice and dealt well with angry people.  When I was in college, I worked for a company that did telephone fundraising and surveys, so I was forced to grow a thick skin.  Even when people yell swear words at me, I just hang up, say “Ooookay then,” and dial my next number.  I don’t take it personally anymore.

After call time, we all went to the intern party at a bar and grill near HQ.  “Intern party” is a bit of a misnomer: the party was attended by the campaign staff, one of the interns from my region, and me.  This is the third campaign staff party I’ve been to, and at this one I felt way less awkward and tense.  I think a lot of it is that I’m finally starting to get to know the staff in person rather than just via social media.  (There was literally a conversation that went like: “Hi, I’m S.”  “I’m Hope, nice to meet you.”  “Oh, I know you!  I retweeted a bunch of your tweets.”)  It also helps that I already knew the field director before I even signed on with this campaign.  We worked together on the presidential election in 2012 and a special election in 2013.  There were still a few moments where I felt like I laughed too loud or said something too weird, but I didn’t obsess over them they way I often do.  I didn’t say a whole lot, but I was engaged, not shut down.

I can’t remember if I’ve mentioned this before, but RFD keeps saying that when my state rep retires, I should run for his seat in the state legislature.  The first couple times, I thought he was just kidding, but he’s repeated it enough that I’m starting to wonder if he’s at least partially serious.  It seems pretty off-the-wall to me.  I mean, what qualifications and record do I have to put on literature?  I don’t even have a real job, and “I’ve worked on a bunch of campaigns” isn’t a great record because people think they don’t want to vote for politicians.  (What they really want is not to be reminded that the person they’re voting for is a politician.)  I don’t know a lot of people, so I don’t have connections to rely on or favors to call in.  I’d be terrible at asking people for money.  I haven’t managed to finish my bachelor’s degree, let alone a law degree.  I’d definitely drop the f-bomb in front of the media at least once.  My psychiatric history might come out, and people might find out that I originally came to Massachusetts to get treatment.  I’m not good at appealing to people from a values standpoint because I gravitate toward data and statistics.

I could go on listing reasons I’d suck at it, but the real issue is that I can’t quite believe that people would actually vote for me.

But there are also some things I could bring to the table that other people couldn’t.  For starters, I’m a woman; both my state senator and representative are men.  I identify as disabled and am very committed to the rights of people with disabilities, who are usually underrepresented in government.  I have experienced poverty, hunger, and homelessness, which is something few lawmakers have a real understanding of.  I am smart and articulate, but I’m not afraid to say I don’t know something.  Then I go learn about it.  I always want to learn more.  And, perhaps most importantly, I love a good fight.

With that being said, I’m going to crash because I’m running on 2 hours of sleep out of the last 48.  Hopefully I’ll be able to get out of bed in time to go take my phone to the Apple store.

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