“We are all patients.” No, you’re not.

Heart Sisters

by Carolyn Thomas  @HeartSisters

patientI read recently about a conference on breast reconstructive surgery following mastectomy, to which not one single Real Live Patient who had actually undergone breast reconstructive surgery following mastectomy was invited to participate. This is, sadly, yet another example of “Patients Excluded” health care conferences – in stark contrast to the growing number of notable conferences that have garnered the “Patients Included”designation.*

The result of attending a “Patients Excluded” conference is just as you might imagine: hundreds of people working in healthcare getting together to talk at each other about caring for people who aren’t even at the table. Or, as one physician arguing for  “Patients Excluded” conferences protested online:

“I already hear patients’ stories all day long in our practice. Why should I have to listen to more stories at my medical conferences?”

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Free time and anxieties

The schedule is one of the great thing about my new job. There’s no worrying about having a project sprung on me and having to cancel evening plans. It’s really important for me to be able to schedule my time as much as possible so I don’t get exhausted and end up sick. (I basically have to schedule downtime to prevent running out of steam.)

Since I finished my MBA coursework, I have been adjusting to having free time, especially on the weekends. My commute eats up basically all my free time during the week, so the difference is not so extreme yet. I’ve been working on paying off some debt I incurred during the six months I was unemployed. While I was getting my budgeting software back up and running, I reviewed my student loan situation. Thankfully, my MBA debt is not that bad, due to some employer reimbursement and some scholarships. Still, I’m getting the itch to try to start paying them off faster than just making the minimum payments. I’ve also been coming to the realization that even a small apartment might be out of my price range for a while.

The free time coupled with the desire to pay of debt and build up savings has had me thinking about ways to pick up a part time job. Even bringing in $200 a month would be a huge help toward my student loans.

MEANWHILE… The job market seems to be getting worse and worse. Friends on both coasts are dealing with layoffs and furloughs and all kinds of crap. My own dad recently got word that he’s spared from this round of layoffs, but he’s being cut back to four days a week instead of five. That’s a 20% reduction in pay and no guarantee of being safe from layoffs down the road.

So I’m feeling very lucky to have landed my job before hiring froze. I’m grateful that I’m in an organization where people don’t really get laid off, with a career path including planned promotions for the next 3 years. But I am so, so stressed about my parents’ situation. I am the doof who has moved back in with them 3 times since college. I’m the one who has asked them to pay for things like medication when I couldn’t afford the co-pays. I’m living under their roof right now, rent free, chipping in with groceries and chores.

They haven’t asked me for anything. But I am stressing and I’ve been doing some big time reflection on my move out timeline. Right now, I think the best thing (not perfect thing) for all of us would be for me to plan to stay at least another few months. This would allow me to pay rent, which would help my parents until my dad can get a part time job (or win the lottery). I would also be able to save money and pay down debt.


MBA Completion Party!

On Saturday, March 2 I completed my final exam for my last MBA course (Economics). It was extremely memorable, because it was a timed, online exam and the power got shut off with 30 minutes left to go. I ended up going into total survival mode and rushed out the door to use the free restaurant wifi down the street. I barely changed out of my pajamas and didn’t even stop to brush my teeth properly. It was really gross, but I knew every second counted. I got the exam done with about 2 minutes to spare, so I guess that’s all that really matters!

Technically my graduation will be in May. The courses in the MBA program are 8 weeks long, where normal undergrad classes are 16 weeks. So MBA students can complete two sessions in a single semester. My classmates are in their second Spring 2013 class right now and they will finish in early May. Therefore, I have to wait.

I did not want to wait to celebrate though! I’ve been taking classes for my MBA (or undergrad pre-requisites) since summer 2009. So I rented space from a lovely local restaurant and threw myself a dinner party and invited a bunch of friends. It was fabulous and I am so happy I got to hang out with some awesome people and eat delicious food. I often lament the difficulty of making adult friends, but I realized that basically everyone in the room (aside from 3 family members, and one friend from middle school years) was a friend I’d made post undergrad.

New Job Report

I started my new job one month weeks ago. A lot of things have totally changed.

I wake up at 4 am to ride a commuter bus to DC. I’m now required to take a lunch break. I’m no longer a graphic designer, although a lot of those skills are coming in handy fairly often. I go through a metal detector (and my bags go through an x-ray) every time I enter the building. I get to bank time worked over 8 hours and my boss actively encourages me to do this so I can take time off without actually using my official leave time.

My co-workers are mainly introverted and keep to themselves. There are approximately 15 people in my office, but our bureau takes up most of a 5 story building.

The building has a cafeteria and a modest-sized gym that is super cheap. You can order office supplies on the Intranet and go downstairs during certain hours to pick up your stuff. I have a cubicle after 10 years of open office working. There is a ton of training I can take online and in my building – mostly free.

In many ways, I’ve adjusted better than I expected. The biggest issue right now is learning my job, and getting used to the way the long commute messes up my weekday schedule. I’m hoping to start working out a few times a week, which should help with energy and overall healthiness. And I’m thrilled to report that I turned in my final MBA assignment last weekend, so I don’t have homework and class to juggle on top of work!

What I Got for Christmas

The Tuesday before Christmas I had three interviews. Three interviews, in DC, all on the same day. I ended up running all over town and was even late to my second interview because the first one ran long. I was slightly sweaty and exhausted by the time I got to my third interview. I didn’t get a chance to eat lunch until they were all finished, in the late afternoon. I managed to gobble a granola bar as I ran a mile to one of the interview locations.

All the interviews went well, but each job was interviewing several people. They all told me not to expect to hear anything for a few weeks, after the new year for sure. So I was not expecting to get a call that Friday (the day before the Christmas holiday). The HR lady from the third interview was offering me the position. I accepted the position the next business day. I will start in February.

The timing is pretty great. I fell into the gap where unemployment had not been extended, so I only qualified for 6 months of benefits. I’ve been out of work since August, so my benefits will end very soon. With the new year, my COBRA payments have increased from $744 a month to about $900. I’m very glad to be able to switch over to employer-subsidized health insurance soon!

I am very lucky to have awesome friends who live less than a mile from my new office. They are graciously allowing me to stay with them for my first week. I won’t have to worry about commuting in to DC, which is pretty horrendous and can take anywhere from an hour to three! After my first week I will be taking a commuter bus to work. It will be really nice to not have to drive myself, and I will receive a transit subsidy as part of my job benefits package. The catch? The bus leaves this area at 5 am! I am already trying to start waking up early because that is going to be a difficult adjustment.

New Hair Considerations

I used to do drastic things to my hair when I got bored. In college this resulted in a home dye job gone bad that left me with bright red hair. I was mortified for a week or two until I could go home and have my mom pay a professional to fix it. Most expensive home dye job ever! I was forbidden to mess around with the stuff after that.

When I was younger I had a whole pixie cut phase. I don’t remember really loving it, but it sure was easy to “style” (I didn’t do anything to it). I was mistaken for a boy a lot. Store clerks would literally call me “sonny.” Flat-chested adolescent me LOVED that, let me tell you.

Growing out the pixie was the.worst. My hair doesn’t cooperate for bangs, thanks to a hellacious cowlick. My hair is wavy and it would not wave uniformly, so a bob would flip half under and half out, no matter how long I spent styling it. The growing out hairstyles made up for all the time I’d saved not having to do my pixie style. At one point I had what I called the koala bear style. It was that bad.

I’m seriously considering chopping my hair again and I realize this might be the surest sign that I’ve finally lost my mind. So I’m looking for advice and opinions. I know the Internet is full of that. A little help, please?

Option One: Carey Mulligan

Carey Mulligan via Allure and About.com

Option Two: AB Chao

via abchao’s instagram


Short Sale Approved

I found out recently that the bank (and the government agency that also backed the loan) approved my short sale request. From the time of the approval I had approximately one month to go to closing. I need to have everything OUT and do a basic clean on the property before closing. When I go to closing, I turn everything over (and sign a bunch of forms) and from that point on the house is no longer mine.

Two weekends ago, my mom came down and we spent a whole day packing. Last Saturday a friend (bless her!) came by for a few hours and teased me about how much kitchen stuff I had. Mom was over both days this weekend and we made a good dent.

It seems like I’ve been packing for a long time, because I started giving away the easy stuff over a month ago. My spare bed and TV got donated to a church sale. The sheets for that bed were given to a homeless shelter. I’ve given a few loads of clothing and smaller items to Goodwill. I’ve taken two trips to the consignment shop and a few random bags went to friends. Mom took a bunch of non-perishable food, cleaning supplies and toiletries home with her today to start using.

Movers are going to handle the furniture and some of the boxes. Mom is paying for this and approximately $100 a month for a small storage unit (fingers crossed that it fits my furniture).

My current challenge/frustration is trying to offload the random smaller furniture that isn’t worth storing. I have three smaller Ikea shelving units, a solid wood nightstand, and a push mower. It’s all on Craigslist and getting no bites. I get really ticked off by the attitude of people here who think something used (in great condition) needs to cost about $1 or free. I don’t think $20-$30 for this stuff is excessive. I’d rather donate it to a charity for FREE than sell something like that for less than $10, ya know?

Interview Tips for Kids Today

Please allow me to go into full cranky old lady mode. I made a last minute decision to visit a job fair for a local retailer opening a new store in my area. I didn’t hear about the event until Friday, when I was already on my way to Fairfax to celebrate a friend’s 30th birthday. The job fair would be on Saturday and Sunday. I crashed at my parents’ house Friday night and woke up groggy and feeling puffy. Not hungover, just the effects of staying out too late (for me, old lady) and driving too much the day before. I rushed down to my place to shower, put on makeup, re-write my cover letter, print my resume, and remove my chartreuse nail polish. I almost wore a suit, because I’ve been conditioned that interview=suit. I wore black dress pants and a sleeveless top with a high neckline. It was a good call.

The interviews were being held in a rented office space in a run down part of town. I arrived just before 12, because I was told that would be the least busy time. There were two waiting areas full of chairs, full of people. Even though there were multiple managers doing interviews, at least 30 people were waiting. I tried not to panic visibly, took my application and sat down to get to work.

People of all ages were waiting for interviews, but the majority were high school aged kids (more girls than guys). There was a decent showing of older ladies, likely retirees who wanted some additional income. I did not see any middle aged or older men.

Here’s where I was really glad I was not wearing a suit. There were a lot of people wearing flip flops, even with nicer outfits. There were a lot of guys in jeans and giant sneakers. There were some girls in dresses that looked like what you’d buy at a department store to wear to church on Easter – full skirt, big colorful flower pattern, tiny little bolero sweater.

One kid had to ask his mom how to spell virtually every word. Toward the end of the day, a family walked in looking like they came straight off a circus train. The father had a ZZ Top long grey beard and a bandana. This was paired with shorts and socks pulled up high. The mom was more understated in typical weekend redneck attire. The son stood between them in his t-shirt and jeans while the father asked the check-in lady questions. They left without applying. I think it was this group that finally ruffled the check-in lady, but she waited until they’d left before she allowed the alarm to show on her face.

If it were up to me, I would immediately tell those kids in jeans and sneakers to leave. I guess they can’t do that for discrimination reasons? Maybe no one cares because it is just retail? But if you are going to run a store where you want the employees to look put together and clean for customers, why would you even think twice if they can’t pull it together for a 15 minute interview?

Do kids not learn this stuff? It would make sense that they wouldn’t learn it in high school. Which class would even teach those skills? It’s not on any standardized test. It just seems like someone needs to explain some interview tips to teenagers.

Weighing Costs of COBRA

When I got laid off on August 3, I was told my health insurance would continue through the end of that month. I received COBRA paperwork in the mail and signed up right away. The COBRA bill came in soon after and I paid it online: $744.75 to continue my health and dental insurance for the month of September. This amount is roughly 75% of my after-tax unemployment insurance payments. I have a pre-existing condition (like 50% of the U.S. population) which means I have to have insurance coverage. Aside from the obvious reasons for having health insurance (that is, getting medical care and prescription medication), the pre-existing condition means I must not have a break in my insurance coverage, or future insurance policies (even those obtained through an employer) could subject me to the pre-existing condition exclusion. This means the insurance company would accept my premiums, but would not cover anything related to any pre-existing condition that was treated in the six months prior. They are allowed to do this for up to a full year. (citation)

This is the reason I am choosing to pay for COBRA to continue my health insurance coverage, even though it technically means I’ll be charging all my other expenses until I find a new job. I’m already giving up my house, but I will have to pay all the utilities, food, and any other necessities. I am willing to go into a relatively small amount of debt because the consequences of not having health coverage of my pre-existing condition for up to a year would be catastrophic to my health and increase my debt to astronomical costs. A single hospitalization could be tens of thousands of dollars. Even if I end up on COBRA for the max of 18 months, I would only pay $13,410. When stated that way it is basically a bargain. Even though it feels like I’m being asked to make a bargain with the devil.

Seven years ago…

Eleven years ago I was in my off-campus apartment in Harrisonburg, VA, getting ready for an early class. I always had early classes and I always watched the news while I got ready. I saw all the footage of the terrorist attacks live. There was no news about classes being cancelled, so I went. I’m pretty sure it was a theater class; I was going to minor in theater or costume design. We all just sat around, talking about what was going on.

Seven years ago today I was in the hospital, preparing to go in to emergency surgery with the understanding that I only had an hour to live. I’d already had a long history of seeing doctors out of town, but I was working in Northern Virginia and it didn’t make sense to drive all the way to Richmond for appointments. I found a local doctor that I liked a lot and I thought I was very lucky. Then I got sick. So sick that, while waiting in an exam room, a nurse told me I needed to keep quiet because I was scaring other patients. I tried to explain I was in so much pain, rationalizing that she wouldn’t tell a woman in labor to quiet down. The nurse nastily told me if I was in “that much pain” I should go to the ER.

I eventually saw the doctor and he had me admitted directly to the hospital, where I stayed for eleven days. Even seven years ago, eleven days was a long time to stay in the hospital. I didn’t really even have a diagnosis. They were fairly sure it was some reproductive issue, cancer probably. They could feel a mass when they did pelvic exams, which they did at every opportunity, it seemed.

I was relieved that it was cancer. Cancer was easier to explain, more socially acceptable, and had more support. Cancer also had an end point. After a certain number of years, you either were declared cured, or you were dead. Crohn’s disease was the opposite of all that and even seven years ago, at age 24, I was very tired of living that life.

A doctor came in on the morning of September 11, 2005. It was not my doctor. This was Sunday, so I got the on call doctor. He told me my white cell count was too high. I forget the number, but it was almost impossibly high, especially with all the antibiotics and other drugs they’d had me on for eleven days. They thought the mass has exploded inside me. They were going to rush me into surgery.

No, I can’t have surgery here, I said. I needed to go to Richmond, to see my surgeon, the doctor who had performed all my other abdominal surgeries.

The on call doctor told me that I wouldn’t make it to Richmond in time.

Richmond is an hour away by car.

I had an hour to live.

The on call doctor left the room to get everything ready. My mom and I were alone in my room. I figured they would be back to take me to surgery soon. Mom immediately called my dad. Then she called the Catholic church we belonged to and asked them to send the pastor over. I called my best friend, but got her voice mail. I didn’t leave a message. I didn’t want to leave her that message.

Time passed. More than an hour. I wasn’t dead, but I also had not seen one hospital employee in that time. When someone did show up, it was to put me on an ambulance for transport to Richmond. There was never any explanation. Mom was not allowed to ride in the ambulance with me, which I never understood. My parents drove down together. The ambulance got lost. Because I was strapped down, and facing backward, and on a ton of painkillers I could not navigate as well as I wanted. The time is fuzzy, but I know it took us over two hours, possibly even three. My parents were in my room by the time I got there. They, of course, were incredibly worried.

It was very late by the time I got to the hospital and the nurses got everything set up. They put me on the women’s specialty unit, which is where ladies go for hysterectomies and similar procedures. The unit was new, and set up to look like a hotel room. The nurses were amazing. The doctor came in and said I didn’t have reproductive cancer. At all. It was just my Crohn’s disease. He also told me I was on an incredibly high dose of painkillers and that he was going to correct that. I was really scared because I was still in a lot of pain, even on the high dose.

I did end up having surgery. I ended up having complications from that surgery. And I ended up spending three solid months in that second hospital and then at least one shorter trip back in the following month. It wasn’t easy. It’s still not easy. That wasn’t my first surgery and I don’t believe it will be my last.


I’m still alive. Every bad thing that happens (as a natural pessimistic, it’s a long list) is still better than honestly believing I had an hour to live. Every sucky day is the opportunity to try again for a better day in the future. Things change, but I’m still alive. That hasn’t changed.

9/11 is a weird day for me. I’m normally very happy, because I’m grateful to be alive in a way that really hits home. It is weird to feel happy on a day that is so somber for our nation. It’s a day to remember those who were lost. For me it’s a reminder that I’m lucky to be alive.