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2012 June : Challahbear

Archive for June, 2012

Thank You, SCOTUS

I have Crohn’s Disease. It is chronic, and there is no cure. Since my diagnosis four and a half years ago, I have lived in fear. My biggest fear has been that my symptoms will flare and I become too ill to work. Without employer-provided health insurance, I bankrupt myself (and perhaps my parents and brother shortly thereafter) trying to control my disease and still, I am unable to afford adequate care.

I am completely functional. I live on my own, hold a steady job, mostly eat and drink whatever I please, and have even run half-marathons. Please, do not dismiss my fears for paranoia.

In December 2008 I graduated from college – a semester early, at the top of my class with well paying job waiting for me, despite the beginning of the financial meltdown only months earlier. In the weeks following my graduation, I suffered from a Crohn’s flare-up and became too ill to routinely partake in everyday activities. I racked up tens of thousands of dollars in hospital bills and other medical expenses. My family consulted with labor attorneys and human resources professionals.  I deferred my start date for work and eventually walked away from the opportunity all together. I could not afford – literally – to start working and get sick again before I worked long enough to be eligible for COBRA.   

I tend to avoid political discourse in online formats and I don’t particularly enjoy arguing about politics. As an adult in the Washington DC area, my lack of interest in political confrontation makes me seem atypical. But it is not because I’m apolitical. I take my civic duty of voting very seriously, I keep up with the news, and there are political issues which I am extremely passionate about. Today I am confident that America’s future involves healthcare reform including insurance coverage for individuals with pre-existing conditions. Regardless of any legislative changes which may alter what that reform looks like, things are improving.

Today, I am less afraid.

Summer Days

It’s been a fairly busy two weeks since my last post and Kirios’ homecoming!

We had a new employee join my team at the Postal Service. It’s nice to have someone else on the team to take on some of the work, and it’s especially nice to have another young woman around the office. Before the new girl, the person closest in age to me was 40. And she’s been on military leave for the past year…

My mom was in town on business for a few nights. We cooked dinner together one of the nights she was in town – salmon on a bed of spinach and feta and grape tomatoes, approved by Kirios, our own expert on Greek cooking.

Kirios and I metro-ed into Washington DC the other weekend to join our friends Marnina and Seth of ibeafoodie.wordpress.com for the Crohn’s & Colitis Foundation’s annual Take Steps fundraiser walk. My parents actually attended their Pittsburgh walk the weekend before. It was a beautiful day and the walk route went around the Tidal Basin, passing by many monuments. It was actually the first time I saw the new Martin Luther King Jr. monument close up too!

Kirios and I stop for a photo during CCFA’s Take Steps

The next day, partially inspired by Marnina and Seth and their friends at the walk who participated in the most recent Team Challenge season together, I decided to go for a morning run. It’s been almost a year and a half since I last went running. I stopped running shortly after completing my second half marathon. Since then Kirios has and I have gone running once or twice, but the last time we did, my knee started hurting pretty soon after we started. Unfortunately, even though so much time has passed, that’s what happened last weekend too.  I ran for a little over 15 minutes before my knee began hurting, and I didn’t make it very far after that. My knee hurt for the rest of the day and it was painful to walk up and down the steps at Kirios’ house that night. I think it’s time to try cycling again, because I think my running days are behind me! 🙁

Friday night I got together with a friend for a night of Thai food and television. He convinced me to try watching Firefly, the cult classic Western in space. I hang out with a lot of geeky guys, and have been encouraged to watch it many times. I have to say, it wasn’t bad. I’m not drinking the cool-aid yet, but I could definitely watch some more on another rainy night.

This past Saturday I woke up early and went to the supermarket to buy blueberries. I made my dad’s famous blueberry tart recipe. Kirios met up with me and we packed sandwiches before heading out to Virginia to meet up with friends at the Del Ray Music Festival in Alexandria. It was a little out of our way and random, but a very cute little festival. We got there around 6pm and ate our sandwiches. We also shared snacks – veggies, chips, dip, and the blueberry tart. It was a lovely picnic. We sat on bales of hay and laid out on blankets while local bands played. The sun went down and the temperature improved a lot. At 8:30 Pat McGee came on stage.  I hadn’t heard of him, but one of our friends is a big fan and got us all together for the event. The music was relaxing and the company couldn’t have been better. As the festival winded down, Kirios and I grabbed forks and fought over the rest of the crust in the tart pan.  We went home happy and sleepy. Days like that are what summer is all about!

 

The Joy of Cooking

There were a few weeks following Kirios’ departure for Europe when I noticed that I was less interested in cooking. I did my best to keep busy during the weekends, including my trip toN ew York, and during the week I generally wanted to rest in the evenings. I made some simple meals – stir-fries and pastas with leftovers to bring to work. And there were a lot of sandwiches; avocado and basil & olive oil asiago cheese on an everything bagel was a popular lunch choice. It was a rather satisfying sandwich, but after two weeks or so, I missed eating more exciting meals and I missed cooking them too.

So in the last week I made a point to get back in the kitchen. On Sunday, I made a cabbage salad with scallions, oranges, and ramen, with a simple oil/red wine vinegar/sugar dressing. It’s a great refreshing summer salad. I knew I needed something heavier, since I’ve learned it’s better to have a side salad than an entrée salad when trying to keep my Crohn’s Diseased tummy happy. So I also made a pot of ravithia, a Greek chick pea stew that Kirios and I first made together with directions from his Mom. This time I left out the celery, because it’s just not a vegetable I would ever pick to eat. And I also added a big potato making the stew even heartier. It may not have been the most seasonal option, but it filled me up for several days and tasted wonderful.

On Monday night I still had plenty of leftovers, so instead of cooking another meal, I baked a pie. I used four apples and two pears for the filling, but it was hard to differentiate a difference in flavor from a regular apple pie. All in all, the pie came out extremely well with a salty and flakey crust and fruit that still had some crunch in the middle.

Tuesday my college friend came over for a dinner bon voyage pizza dinner. He works on a cruise line and is generally only in town for short visits home in between ship contracts, so we developed a tradition of sharing homemade pizza together to celebrate either his return or departure, since it was one of his favorite meals I made in college. Little did he know that in addition to our pizza, topped with red and yellow peppers, scallions, mushrooms, sun dried tomatoes, and fresh parmesan cheese (a filling meal with thick crust on its own) he would also be served an appetizer of cabbage salad and a dessert of pie. My friend brought beer to go with our meal and I must admit I didn’t have any room for pie.

By Wednesday I was ready for a break from all of the cooking and enjoyed my leftovers. On Thursday, I decided it had been too long since I had red meat, so I made a trip to Koshermart. I stocked up on a variety of beef items, but was hungry by the time I made it back from the store so I ate more leftovers. Friday I was invited to have Shabbat dinner with a family, so I actually didn’t do anymore cooking until Saturday. But I still had the cooking bug. I make a spicy Indian cauliflower by roasting the cauliflower with oil and turmeric, and then adding a tomato sauce with garlic powder and large quantities of garam masala. The result was a heavy and potent vegetable dish.

Kirios returned from his travels Saturday evening (and enjoyed some pie when we reunited). So for lunch on Sunday I wanted to share a nice welcome home lunch together. We broiled veal chops with curry powder and variety of other spices, and enjoyed it with roasted pine nut couscous, spicy cauliflower, and homemade challah. The veal was well cooked, but slightly over-spiced. I was thrilled to have meat again. And even more thrilled to have Kirios back!

Playing in New York

This year I spent Memorial Day weekend in New York City with my cousins.  Weekend getaways are always fun, and New York is typically an exciting destination with lots to do. That weekend was no exception. I haven’t traveled to New York on my own in a couple of years, but in the past I usually took the Amtrak. This time I jumped on the discount bus bandwagon, finding it extremely convenient that the Vamoose Bus departs for Penn Station within walking distance of my apartment. I boarded a 7am bus on Saturday morning and was in the city before 11. Not bad for a holiday weekend! Plus I was even able to read without getting car sick for a good portion of the trip!

I packed light, only bringing my purse and a backpack. My cousins met and we went out for lunch before heading to a matinee on Broadway. In all of my 25 years that I’ve been traveling to New York to visit relatives, I’ve actually only seen two shows on Broadway. Both were during my 8th grade class trip. So when my mom was in town a few weeks earlier and saw a show with some family, I knew I wanted to do the same. We saw Sister Act. Raven Symone played the lead, she wasn’t Whoopi Goldberg, but she was great. She’s come along way since the Cosby Show and ABC Family Channel movies… I guess we all grow up. After the show we met up with more family for dinner and spent the rest of the night hanging out and catching up.

Sunday was quite the to-do. I joined a group of 10 ladies to celebrate with one of my cousins in bachelorette party fashion. We met for brunch at The Smith. After donning my hot pink “Team Bride” pin, I ordered an omelet with wild mushrooms and fontina. It came with a side of home fries. I’m always a sucker for potatoes at brunch. The omelet was quite tasty – better than most, but the large pool of oil on my plate made it slightly less appetizing. The brunch special came with a choice of drinks. I ordered the freshly squeezed blood orange mimosa, which was bitterer than I had hoped. One of my cousins ordered the passion punch – it was heavy on the rum but a more refreshing choice.

After brunch we took the bus to the East End to complete our bachelorette scavenger hunt. Although we were all one team, so it was more like a bucket list. We visited candy stores, clothing stores, vintage boutiques and so forth, forcing the bride to pose with cute and sometimes crazy things. I think the best pictures were of her in neon pink leggings, a neon yellow tank top, a neon green fanny pack, and of course a side pony tail. Equally entertaining was the flamboyant thrift store owner eager to teach us all the trick to wearing any hat. (According to him, even the most ridiculous shower cap looking thing is high fashion when tilted to the side of your head). This scavenger hunt of course included a caffeine/bathroom break at Starbucks, and ended with frozen yogurt. It was super hot that weekend, so both were needed.

Following the scavenger hunt, we took the Subway to Williamsburg and surprised the bride with a jewelry making class at Brooklyn Charm. Their patient staff taught us how to make wire wrap bracelets with the beads of our choice. Half of the group took a basic assembly course instead, making necklaces with dangling charms. Although learning to wire-wrap was a bit of a challenge for me, I usually have a hard time finding bracelets small enough that they won’t fall off my teeny tiny wrists. My do-it-yourself project fits snuggly. We finished our jewelry class by popping open two bottles of champagne and toasting the bride.

Since it was so hot out and already 8pm, most of us started to feel the champagne and were eager to head to dinner. We went to baci & abbraci (Italian for hugs and kisses… appropriate, I suppose) and shared a variety of vegetarian pizzas as an appetizer. Their vegetariana with eggplant, zucchini, and peppers was my favorite, but their focaccia tartufata is also worth mentioning; a thin layer of dough with creamy robiola cheese, topped with another layer of crust and truffle oil on top. My main course was exceptional gnocchi violette, made with red beets and goat cheese in a cream sauce with wild arugula. It actually deserves to be said again – it was exceptional. I even found a restaurant review with the recipe for it here. I don’t generally make cream sauces at home, but if I ever feel ambitious and like making an exception… The dish was even better when paired with a nice malbec. I cleaned my plate, and didn’t even leave room for the enormous tiramisu cake the restaurant prepared for us. I did enjoy the waiters singing “Happy Birthday” to the bride. Somehow the theme of the party had escaped them, despite all of our fanfare. I don’t think the point of a bachelorette party has ever been to blend!

Despite our bridesmaid planners’ best efforts to pick out a bar for post-dinner cocktails; no one had the energy for another stop after a full day of festivities. We left the restaurant after 11pm and my cousins and I splurged for a cab to return to their apartment building in Washington Heights. I was glad to sleep in a bit the next morning!

Monday morning I packed up and hung out with my cousin a little. I used some of the super fun glitter nail polish she had on all weekend. Then I met up with a good friend of mine who previously lived in DC for a year for sushi and catch up time. Only my friend had trouble deciding if he wanted sushi or pizza. I chose sushi, since I had several Italian style pizzas over the weekend already. But I was sad not to have real New York pizza. Luckily for me, my friend decided to grab a slice before having sushi, and he was eating it when I met him. I had one delicious bite and felt more satisfied with my trip. After lunch, we stopped at a small bakery and I bought a cookie that looked as much like the colorful sprinkle cookies my Zaydie used to buy at Lord’s Bakery, and I saved it for later. As a kid, we used to take a whole box of them back home with us following a trip to Brooklyn. I headed back to Penn Station to catch my bus in the afternoon. It was my first solo trip on the subway, which seems silly to acknowledge as someone who’s been riding the DC metro everywhere for 7 years now, but let’s be honest; the subway is WAY more confusing. I picked up a New York bagel to eat for dinner on the bus, and in just a few more hours I was home.

Is there a Doctor in the House?

I have been living in the Maryland suburbs of the DC metro area for 3 whole years now under my own insurance plan without a primary care physician. In college, I did my best to schedule doctors’ appointments over breaks and holidays when I would be home in Pittsburgh. This was especially necessary because it’s very difficult to see an out of area doctor on University of Pittsburgh Medical Center Insurance, which I and the majority of Pittsburgh residents had at the time.

When I was diagnosed with Crohn’s Disease in the beginning of 2008, my gastroenterologist told me I would need to start seeing a doctor near school to manage my disease. I worked with my insurance company to ensure I could see an out of area provider. They may have even picked the doctor. When I returned to school to start my new semester, I met with my new gastroenterologist. He was an older man and more than a bit out of touch. He lectured me on the effects of stress and how it can exacerbate the symptoms of Crohn’s Disease. “Do you have anything causing stress in your life right now?” he asked. “Um, it’s the first week of classes and I just broke up with my boyfriend,” He continued his lecture, telling me it was important to eliminate all stress from my life. So naturally then I should drop out of school and never date again. Come to think of it, work and families create stress too. Perhaps I should just sit in an empty room by myself all day. Needless to say, I was not a fan of Dr. DC Gastroenterology from the start.

Despite my disdain for my new doctor, I continued to see him. I was a busy college student with out of area insurance. I had classes, extracurriculars, and parties to worry about. Switching doctors is stressful too! I was able to get appointments when I needed them, and get the medicine I needed to manage my disease… until I didn’t.

By the time I graduated in December 2008, my symptoms had worsened to a point where a drastic medical intervention was necessary. I set up meetings with my doctor, only to be seen by a new fellow or physician’s assistant unfamiliar with my case for 15 minutes, occasionally followed by 5 minutes with my doctor himself. The doctor never seemed to remember the details of my case that while either, and seemed less and less “with it.” (Did I mention he was probably in his seventies?) I was scheduled to start my first job in February and decided that it would be a good time to find a new gastroenterologist once I started my new insurance plan. Meanwhile, the current doctor’s office prescribed me a low dose of steroids, prednisone, to help my symptoms. It wasn’t enough and they quickly bumped my dosage up. It still wasn’t enough. My dad came down to help take care of me and we visited the doctor’s office. They bumped my steroids up again. (Did I mention they have horrible side effects, all of which I was experiencing) They said if I didn’t respond, I would need to be hospitalized and that I would most likely need surgery to remove part of my colon.

Needless to say, my dad and I were pretty scared. We had already been researching other doctors in the area (bless my parents for trusting me when I said I didn’t like the one I had) and following this terrible appointment we walked down the block to a different practice that we had been eyeing. My dad was on hold with the insurance company requesting authorization to get a second opinion. He looked at the receptionist with fear in his eyes and asked if there were any gastroenterologists that could see me. The sooner the better.

I was seen two days later. Unfortunately I got sicker before I got better, and I did need to be hospitalized and ended up moving back home to Pittsburghto recover. But I did make it back to the DC area, and it helped knowing that a good concerned and cooperative specialist was there ready to help me manage my disease. He had even called to check up on me while I was gone and spoke with my gastroenterologist in Pittsburgh to stay up to date on my treatment.

When I moved back to the area three years ago I enrolled in an HMO insurance plan that didn’t require referrals to see specialists. Aside from my gastroenterologist’s practice, I have been to four other specialists to deal with things like asthma and high blood pressure. I visited the emergency room once for a high fever at night on the weekend that appeared to go up instead of down with Tylenol (I was being extra cautious since I take immunosuppressant medication) and I made one trip to urgent care for a strep test. Lately, coordinating my care between all of the specialists has been a real chore. I photocopy pages of lab results before visiting doctors, I consult multiple doctors before starting new medications, and I have a lot of questions. Most of my doctors are willing to answer them to the best of their ability, but by now, we all agree: I need a PCP to help me with this.

I wish this was the solution to my problem. Instead, it is yet another stressor in my life. Most PCPs in this area are NOT accepting new patients. In fact, when you hear of one that is, you almost have to wonder what’s wrong with them. I’m not looking for someone to give me a strep test; (although I may need him or her to do that for me at some point) I need a partner in managing my health. I deserve a doctor’s office where the staff is efficient in courteous in scheduling appointments whether in advance or on the same day if I am ill, who accepts my health insurance plan, and doesn’t play games when billing. I deserve a doctor who is knowledgeable, listens and addresses my concerns in a pleasant if not supportive manner. I deserve a doctor who is part of an on-call network should I be ill after 5pm or over the weekend. I deserve a doctor who will visit me at the hospital of my choice should I be admitted.

It seems like I’m asking for a lot. And I know not every doctor can do everything well, they are human. But it shouldn’t be treated the same way as a self-declared princess holding out for a tall dark and handsome doctor or a lawyer making $200K+/year who is funny, charming, good with kids, and has the same religious/political/ideological beliefs as she does. After all, I’m not asking for exclusivity here! But my health is too important to settle for a frog.