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.
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.
Nearly 2 months ago, my friend Nick Dawson encouraged me to apply for a scholarship to the Stanford Medicine X conference. I didn’t think I had a chance, but the conference sounded so exciting that I decided to give it a shot and whipped up an application. The deadline for the award announcement passed, and I never heard anything, so I chalked it up to a miss. And then last night I got an email saying I’d been awarded a scholarship! My name is up on the website and everything.
According to their website, “Medicine X is a catalyst for new ideas about the future of medicine and health care. The Medicine X initiative is designed to explore the potential of social media and information technology to advance the practice of medicine, improve health, and empower patients to be active participants in their own care. The “X” is meant to evoke a move beyond numbers and trends—it represents the infinite possibilities for current and future information technologies to improve health.”
They’ve got Michael Graves as a keynote speaker! A man I wrote about in my application without even realize he was going to be at the event. They will also have IDEO, which is a company mentioned in every business book ever written. As a designer who is also getting her MBA, I have immense love and appreciation for IDEO. Plus I’m hoping to meet up with some awesome people. Some I know from Twitter and communities like #hcsm and But You Don’t Look Sick.
Now it is not a full ride, but it is significantly less than the over $1,000 fee for normal attendees. I still need to cover accommodations and travel costs, but I’m hoping some lovely friends in the area will let me couch surf. I’m so excited to be going and the bonus is that since I’m already going to be flying to California, I have the perfect excuse to spend a couple extra days bumming around my favorite state. (I haven’t been back since the Lost finale.) I’m hoping to be able to fly out of LAX and spend a day or two in my old (preschool) stomping ground.
This week I got some bad news about the current state of my health, and this positive health-related news is really cheering me up.
I spent my Saturday night at a sleep disorder center having a sleep study done. I’ve never had one of these before and didn’t really know what to expect, aside from being hooked up to a bunch of machines. My doctor didn’t suspect sleep apnea, but apparently all kinds of fun stuff can happen while you sleep. Some examples my doctor gave me were “not getting enough oxygen” or “drop in blood pressure.” Any of these things could happen without me waking up enough to realize something was wrong.
I brought a small bag with my PJs, a book, toothbrush and toothpaste and a spare outfit for the next day. I did not know until I got there that I could have brought my own pillow.
I arrived a little early, which was probably good since it took over an hour to get everything hooked up to my body. Each person has their own room, which is like a cross between a cheap hotel room and a hospital. There was a TV, but you could only watch it while getting set up. Each room has a bathroom and like a hospital, the bathroom has benches in the shower and a big “dirty linen” hamper. They also had a bunch of towels, but no wash cloths. You were not allowed to get in bed until everything was arranged. I’m the kind of person who likes to lay in bed to read or watch TV, so that was already weird and uncomfortable. I was assigned a male technician who got me all set up and was then responsible for monitoring me from a room across the hall. He asked if I wanted anything to eat or drink. They had a whole list of sugary snacks and some juice and caffeine free drinks, a little like being on an airplane, but I just got water. I had two electrode patches on each leg. The technician measured my neck, and all around my head, then drew on my scalp/hair with a red oil pencil. Then he “glued” EEG electrodes all over my head. I got electrodes on my face, including one that was really close to my eye and super annoying. He put two elastic bands around my body, one around my waist and another around my chest. These were plugged into a monitor and would track how my chest and abdomen expanded while I breathed. These were really weird at first, but I eventually got mostly accustomed to them. I did wake up several times I had the feeling I wanted to take off my bra, but it was just the weird chest strap. At least they didn’t strap me down to the bed!
The room was set up with a camera and a microphone. I was allowed to read for a while until I felt sleepy. I was supposed to say when I was ready for them to turn the reading light out. But when I put my book on the side table and lay still for a few minutes, a lady technician came in and asked if I wanted the light out. I also got her to turn the heat up because I was freezing. I didn’t like the oxygen mask they tried to get me to wear, so I got to skip that one. It just felt like being underwater, in a creepy way. Too much pressure in my ears. They did give me two things that went slightly into my nostrils and one part that hung down just in front of my lips. That was weird and I kept wanting to lick it away.
Once everything was set up, I didn’t have as much trouble falling asleep as I had anticipated. However, I definitely felt like I woke up more during the night than usual. I was awake a few times coughing, because my throat felt really dry, possibly the air in the room was dry. I would try to flip over and get tangled a little and I think that woke me up, where in my normal bed I can roll over without waking up. Also, I really should have brought my own pillow. I’m a princess and the pea type and can be very particular. The walls of the rooms were not thick enough and I could hear the technician setting up the patient in the next room. Light from the hallway came in through the crack under the door and there was light from some of the monitors. I sleep best in a complete blackout darkness situation, but I don’t like those eye masks.
I woke up once to use the bathroom. I know I woke up probably at least 5 times total. Sometimes I’d wake up and just sorta think “oh, I’m still in this place” but I never woke up freaking out.
The technician woke me up at 5:30 am and we took all the wires off. In the morning, my hair was crazy. The glue stuff for the EGG electrodes made my hair look like I was auditioning for the sequel to “There’s Something About Mary.” I wasn’t planning to shower there, and had not brought any hair stuff, not even a comb! They had a hair dryer I could use, except it was broken. It was about 35 degrees and drizzling this morning and I was planning to head straight to Target. I had to think if I wanted to go out with glue hair, like a crazy person, or with wet hair, like a person about to catch pneumonia. In the end, I stuffed my hair under my winter hat and went to my parents’ house to shower.
It should take about 7-10 before my doctor gets the test results, and probably another few days before I hear from her. Hopefully nothing crazy shows up, and extra hopefully I don’t have to have that test again. Overall it wasn’t terrible, but it was not exactly enjoyable either. C-
What do you call a change in the way you plan to eat? The word “diet” makes it sound like I’m doing some fad thing for 30 days to slim down for vacation.
I recently met a nurse (she’s a PhD candidate) who has spent the last 30 years working out a diet for people with IBD. She’s got Crohn’s disease herself, and she follows the diet. Plus she just finished a study on the diet out of UVA. I’m always wary of programs that claim if you only eat THIS, or in this COMBINATION, then you’ll be cured/healthy/magic. Another woman I know was actually in the study and she did really well.
So after lots of thought and lamentation, I decided I would give it a try myself. You need to realize that Candy and Bread are my two favorite food groups. I’m a big snacker and I’ve always got some kind of candy around (sugar-based, like Skittles or Haribo gummies).
This is how it works:
- No white sugar
- No white flour (or anything refined, like white rice)
- Eat 1/2 cup of Bran Buds cereal each day (they are some other health food store brands, but basically it’s a super high bran-content cereal with a ton of fiber)
That’s it, those are the only rules and restrictions.
So it’s not as bad as being low carb, or gluten free, or trying to keep my blood sugar low…
I can still have bread or pasta as long as it is whole wheat (real whole wheat, which is harder to find that some of the bs the grocery store sells) and doesn’t have added sugar. I can still have starch like potatoes, and rice as long as it is brown rice or similar. I can still have sweet things, as long as I use honey, or agave nectar, or maple syrup.
I’ve been making a batch of brown rice every few days. I’ve found peanut butter that is sugar-free and a few jams that are just sweetened with fruit. I bought a bunch of fancy honey that is good just spread on whole wheat bread. I can still have cheese, and nachos, and potato chips. I’m trying to eat more veggies so I don’t gain 100 pounds from all the sodium I’m eating instead of sugar.
I bought a few cookbooks, but I haven’t had time to try anything yet. I’m hoping to try to bake something this weekend, because I need more carbs back in my life!
Friday I started feeling bad. Worse than normal. Saturday I had to come into “town” to run a few errands, and as soon as I got back I went straight into chilling mode. I was exhausted. Sunday, I was on my way to meet my parents, but went to a walk in clinic instead. Apparently these places vary, and mine is the “treat your exact complaint, but do no further tests or investigation” type, so I got an anti-viral to stop the spread of the sores (you can’t cure them) and that was that. I spent 3 days in bed.
Wednesday morning I finally got in with my regular doctor. She is awesome and knows my deal, so A) she does her job and B) she takes me seriously. They did a pee test which they said came back fine and a CBC blood test that they also said (much later that day) came back fine.
I spent Wednesday at my parents’ house because it is closer to the doctor and closer to my parents (even when they are at work) in case stuff got worse. Plus they have way fewer stairs than me and that was kicking my sick butt. Wednesday evening I made my mom take me to the ER so I could get a full set of tests done and make sure there wasn’t anything seriously wrong with my insides.
The ER did blood tests, the CBC and also stuff that measures how active the Crohn’s is. The doctor sent off for a West Nile Virus test, just in case, since I’d been bitten to death in Maryland recently where there were some cases reported. They told me that there are new guidelines to limit radiation exposure, and as a result they didn’t want to do a CT scan unless they had to, so we did an ultrasound first.
Which I hate. I’ve debated going into details, and if you ever go out drinking with me maybe I’ll tell you, but for now let’s just say I hate this test for a lot of good reasons. If you’ve had the same then you know what I mean and if not then you can remain as blissfully ignorant as I was when I walked into my first one. I got a super nice tech though and that really does help. It’s also cool because she explained things to me as she was taking the pictures, why she kept going back to the same spot, hoping the picture would change…
The picture never changed the way she wanted it to, because it seems like I have inflammation in both the right and left sides of my reproductive system. I’ve had trouble with the left for several years now, but (because my insides have been so hacked up already) my surgeon basically forbade surgery unless it was an actually emergency. So the right side is a new thing. And they mentioned infertility.
[I’m 30. I’m not dating. When I was dating the guy I thought I would marry, we both admitted to not wanting kids. I still don’t want kids. I like kids. I don’t want my own. It’s probably not a great idea to pass on my wonderful genes and by the time I’m in a kid-having situation, it’d be sorta silly to have babies. However, if I ever have a midlife crisis and need kids, I don’t have any hangups about adoption.]
They did find a bladder infection which doesn’t feel like any UTI I’ve ever had. And you’ll remember my doctor said that test came out clean. So I’m on antibiotics now too.
My ultrasound pictures were mailed to my gynecologist and I’m hoping she can call me back and let me know if we need to do something. Or if there is anything that can be done. While I’m not worried about fertility, I do not want to have to be on hormone replacement the rest of my life. I also don’t want stuff left in to get infected and cause me additional pain.
I’m hoping she calls soon and that everything gets figured out.
Today I was listening to an old Nerdist podcast with Mike Birbiglia. Birbiglia, a comedian, was telling a story about telling jokes about cancer. He was explaining how sometimes it was stressful to tell jokes about such a touchy subject. He went on to explain that often said axiom that a lot of comedians “are people who had to make things funny at home,” had to make uncomfortable situations funny as a way to cope.
This made me think of an experience I’ve had a few times.
Typically when I go to the ER, it’s because I’m in terrible pain and I usually get tests done to see if everything is okay, some pain medication to ease my suffering, and am then sent home and told to follow up with my doctor. That’s what happens when they don’t find anything bad in the tests, obviously.
Nearly every time I go to the ER, my mom goes with me (usually she’s driving). There is a lot of waiting involved in an ER visit, and typically even if you are back in a room, there’s no TV, or nothing good on and it’s just boring. Plus after several hours of being in pain, plus a car trip that can be up to an hour long (I don’t go to my local ER – that’s another story), I can get a little loopy.
So we normally joke around. It helps pass the time, and it helps take the edge off a not fun situation.
I’ve had doctors and/or nurses flat out say that I couldn’t possibly be in that much pain because I was laughing. Like pain means you have to be wailing and gnashing your teeth and writing around on the floor every fricking second? Because I’ve also had an experience when I was in a ton of pain and was told that I needed to be quiet because I was disrupting the other patients in the doctor’s office.
So, I guess it is a no win situation. But I’m not going to stop joking around, or even laughing whenever possible. Because if I’m going to be treated weirdly no matter which way I behave, then I’d rather try my best to make the situation more comfortable for myself.